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...Living with a disability can make us stubborn in our ways. I know for me it’s the inability to control what my body can do. I think what we lack...

...Growing up, it seemed like my parents were always fighting with the school district about something. Most of the challenges I faced as a student were physical like being able...

...Spinal muscular atrophy (SMA) is a rare genetic disorder passed from parents to their children. SMA affects the spinal nerves by causing them to waste away. This results in the...

...For our firstborn son, the first five years of his life were pretty much routine. We were oblivious to any health problems. The only noticeable activity was that he ran...

...Having the right people around you in life is so vital. Especially in a world where so much is said online, and people can hide behind computers to share opinions...

...When it comes to finding a specialist for spinal muscular atrophy, there are many different factors that come into play. Is the personality a good fit? Is this person up...

...I was recently on a Zoom call with other people who were disabled. One of the moderators who wasn’t disabled made a comment that drove me nuts. She said she...

...We asked our team of advocates: What have advancements in treatment for spinal muscular atrophy meant to you?Allie: The celebration of life. I have watched my disease take away so...

...Our daughter was diagnosed with spinal muscular atrophy (SMA) at six months old. The doctor told my wife and me that our daughter would need early intervention training, including therapy...

...We asked our team of advocates: What challenges have you faced around SMA treatment options?Allie: Due to how the approval of the medication process goes with the trials, which often...

...My worst nightmare is the thought of any of my equipment breaking at a time when I need it the most. Whether it be my wheelchair, BiPAP, cough assist machine...

...The Media Habits Survey is now closed. Thank you for your interest! Managing a chronic condition is not easy and can be physically and mentally exhausting. What types of media...

...I don’t think there’s anyone that actually enjoys going to the dentist. Now, mix in the fact that this could be quite a unique situation or a difficult one if...

...Traveling when you have SMA can be a daunting undertaking. Many individuals who have SMA have never flown on an airplane. Air travel remains quite inaccessible even in 2022. As...

...Let’s talk about saving money while being on government assistance in the United States. I am on social security disability which is different from supplemental security income but still riddled...

...Previously I wrote about getting my wisdom teeth removed and the pre and post-surgery to make sure everything was successful considering my respiratory issues. But the process to fix my...

...I wrote an article talking about the benefits I have been experiencing from stretching. I also had a long run at receiving massage therapy. Again I’m not a doctor so...

...I’m approaching my 33rd year of life, and as I reflect on my younger years, I remember thinking I had it all figured out when I was in my teens...

...In the 1980s, my daughter who had spinal muscular atrophy (SMA) was growing bigger and taller. We noticed that she was having difficulty sitting upright by herself in her wheelchair...

...I have talked about Mike’s good friends who were always including him with all their adventures.  Well, the best friend of all in his younger years was his brother Dan...